I thought I was the only one with a teenager being diagnosed. My son Jordan was 15 when we found out, and we only found out because he was to undergo an 8 hour spine surgery to correct Sherman's Kyphosis. He had been diagnosed with Asthma when he was 5, but no-one ever suggested testing for CF. They told me Asthma usually gets better as they age, but Jordan's worsened. Since we had the former Asthma diagnosis, the surgeon wanted us to see a pulmonologist. He immediately did a sweat test, then sent us to Children's Hospital for another to confirm. We then sent DNA to Ambry, and they tell me Jordan has a new mutation that they have never seen before. It has been about 16 months since we learned of the CF. Learning this certainly answered a lot of questions about why his Asthma worsened, and why he has trouble gaining weight, etc. His older brother is 19 and is a carrier. I heard today on Paul Harvey about a new pill to cure defective genes. We can only hope and pray that it will do it's job. I know my son has inspired me more than anyone I've ever known with his acceptance of the diagnosis. He is so strong and has recovered from his spine surgery so well. He is even holding down a part-time job and has returned to his high school. (We did the first semester at home) Hang in there and don't underestimate your child. They are certainly stronger than us parents.
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13 year old Boy-can some one help me?
- Thread starter Childressj
- Start date
I thought I was the only one with a teenager being diagnosed. My son Jordan was 15 when we found out, and we only found out because he was to undergo an 8 hour spine surgery to correct Sherman's Kyphosis. He had been diagnosed with Asthma when he was 5, but no-one ever suggested testing for CF. They told me Asthma usually gets better as they age, but Jordan's worsened. Since we had the former Asthma diagnosis, the surgeon wanted us to see a pulmonologist. He immediately did a sweat test, then sent us to Children's Hospital for another to confirm. We then sent DNA to Ambry, and they tell me Jordan has a new mutation that they have never seen before. It has been about 16 months since we learned of the CF. Learning this certainly answered a lot of questions about why his Asthma worsened, and why he has trouble gaining weight, etc. His older brother is 19 and is a carrier. I heard today on Paul Harvey about a new pill to cure defective genes. We can only hope and pray that it will do it's job. I know my son has inspired me more than anyone I've ever known with his acceptance of the diagnosis. He is so strong and has recovered from his spine surgery so well. He is even holding down a part-time job and has returned to his high school. (We did the first semester at home) Hang in there and don't underestimate your child. They are certainly stronger than us parents.
Childressj
New member
UPDATE:
We went to the CF/pulmonolgist on Friday. He checked Trevor's PFT's and oxygen levels and reported to me they were fine. He spent quite a long time with us while we went over every detail that I have been telling all of you. Dr. Mahesh said that it is obvious that something is wrong and that we have several options to explore. He really felt like Trevor's Asthma ("if he has it") is under treated so he gave prescriptions for higher doses of meds he is already taking and added another preventative asthma med. then he ordered some blood work for Trevor to check his IGG and IGE levels, he said that he didn't think that Trevor had CF but that he was not positive so he was going to check out these blood test and do a sinus CT and send us to yet another ENT. He did not feel that culturing Trevor would work because he had been on Amoxicillian 2 weeks ago and seemed better and he said that if he had a cf bug then the amoxicillian would not work anyway. Since Trevor was having a good day of health that Friday, it made it a little harder. I really think this doc is going to follow-up on Trevor and figure this out with me. Thanks to all................Jennifer
We went to the CF/pulmonolgist on Friday. He checked Trevor's PFT's and oxygen levels and reported to me they were fine. He spent quite a long time with us while we went over every detail that I have been telling all of you. Dr. Mahesh said that it is obvious that something is wrong and that we have several options to explore. He really felt like Trevor's Asthma ("if he has it") is under treated so he gave prescriptions for higher doses of meds he is already taking and added another preventative asthma med. then he ordered some blood work for Trevor to check his IGG and IGE levels, he said that he didn't think that Trevor had CF but that he was not positive so he was going to check out these blood test and do a sinus CT and send us to yet another ENT. He did not feel that culturing Trevor would work because he had been on Amoxicillian 2 weeks ago and seemed better and he said that if he had a cf bug then the amoxicillian would not work anyway. Since Trevor was having a good day of health that Friday, it made it a little harder. I really think this doc is going to follow-up on Trevor and figure this out with me. Thanks to all................Jennifer
Childressj
New member
UPDATE:
We went to the CF/pulmonolgist on Friday. He checked Trevor's PFT's and oxygen levels and reported to me they were fine. He spent quite a long time with us while we went over every detail that I have been telling all of you. Dr. Mahesh said that it is obvious that something is wrong and that we have several options to explore. He really felt like Trevor's Asthma ("if he has it") is under treated so he gave prescriptions for higher doses of meds he is already taking and added another preventative asthma med. then he ordered some blood work for Trevor to check his IGG and IGE levels, he said that he didn't think that Trevor had CF but that he was not positive so he was going to check out these blood test and do a sinus CT and send us to yet another ENT. He did not feel that culturing Trevor would work because he had been on Amoxicillian 2 weeks ago and seemed better and he said that if he had a cf bug then the amoxicillian would not work anyway. Since Trevor was having a good day of health that Friday, it made it a little harder. I really think this doc is going to follow-up on Trevor and figure this out with me. Thanks to all................Jennifer
We went to the CF/pulmonolgist on Friday. He checked Trevor's PFT's and oxygen levels and reported to me they were fine. He spent quite a long time with us while we went over every detail that I have been telling all of you. Dr. Mahesh said that it is obvious that something is wrong and that we have several options to explore. He really felt like Trevor's Asthma ("if he has it") is under treated so he gave prescriptions for higher doses of meds he is already taking and added another preventative asthma med. then he ordered some blood work for Trevor to check his IGG and IGE levels, he said that he didn't think that Trevor had CF but that he was not positive so he was going to check out these blood test and do a sinus CT and send us to yet another ENT. He did not feel that culturing Trevor would work because he had been on Amoxicillian 2 weeks ago and seemed better and he said that if he had a cf bug then the amoxicillian would not work anyway. Since Trevor was having a good day of health that Friday, it made it a little harder. I really think this doc is going to follow-up on Trevor and figure this out with me. Thanks to all................Jennifer
Childressj
New member
UPDATE:
We went to the CF/pulmonolgist on Friday. He checked Trevor's PFT's and oxygen levels and reported to me they were fine. He spent quite a long time with us while we went over every detail that I have been telling all of you. Dr. Mahesh said that it is obvious that something is wrong and that we have several options to explore. He really felt like Trevor's Asthma ("if he has it") is under treated so he gave prescriptions for higher doses of meds he is already taking and added another preventative asthma med. then he ordered some blood work for Trevor to check his IGG and IGE levels, he said that he didn't think that Trevor had CF but that he was not positive so he was going to check out these blood test and do a sinus CT and send us to yet another ENT. He did not feel that culturing Trevor would work because he had been on Amoxicillian 2 weeks ago and seemed better and he said that if he had a cf bug then the amoxicillian would not work anyway. Since Trevor was having a good day of health that Friday, it made it a little harder. I really think this doc is going to follow-up on Trevor and figure this out with me. Thanks to all................Jennifer
We went to the CF/pulmonolgist on Friday. He checked Trevor's PFT's and oxygen levels and reported to me they were fine. He spent quite a long time with us while we went over every detail that I have been telling all of you. Dr. Mahesh said that it is obvious that something is wrong and that we have several options to explore. He really felt like Trevor's Asthma ("if he has it") is under treated so he gave prescriptions for higher doses of meds he is already taking and added another preventative asthma med. then he ordered some blood work for Trevor to check his IGG and IGE levels, he said that he didn't think that Trevor had CF but that he was not positive so he was going to check out these blood test and do a sinus CT and send us to yet another ENT. He did not feel that culturing Trevor would work because he had been on Amoxicillian 2 weeks ago and seemed better and he said that if he had a cf bug then the amoxicillian would not work anyway. Since Trevor was having a good day of health that Friday, it made it a little harder. I really think this doc is going to follow-up on Trevor and figure this out with me. Thanks to all................Jennifer
Childressj
New member
UPDATE:
I am not sure about this one and some of you may have heard of this mroe then me.
They tested Trevor's Pnuemonococcal Antibodies (23) and all of them were abnormally low. They are scheduling Trevor to have a pnuemovax and then they will check his levels again and if they have not improved they will send us on to immunology. As far as the rest of testing they want to wait until Trevor gets another infection so that insurance will pay for the CT scan (weird) but I am sure it won't be long. I'll keep everyone posted.
I am not sure about this one and some of you may have heard of this mroe then me.
They tested Trevor's Pnuemonococcal Antibodies (23) and all of them were abnormally low. They are scheduling Trevor to have a pnuemovax and then they will check his levels again and if they have not improved they will send us on to immunology. As far as the rest of testing they want to wait until Trevor gets another infection so that insurance will pay for the CT scan (weird) but I am sure it won't be long. I'll keep everyone posted.
Childressj
New member
UPDATE:
I am not sure about this one and some of you may have heard of this mroe then me.
They tested Trevor's Pnuemonococcal Antibodies (23) and all of them were abnormally low. They are scheduling Trevor to have a pnuemovax and then they will check his levels again and if they have not improved they will send us on to immunology. As far as the rest of testing they want to wait until Trevor gets another infection so that insurance will pay for the CT scan (weird) but I am sure it won't be long. I'll keep everyone posted.
I am not sure about this one and some of you may have heard of this mroe then me.
They tested Trevor's Pnuemonococcal Antibodies (23) and all of them were abnormally low. They are scheduling Trevor to have a pnuemovax and then they will check his levels again and if they have not improved they will send us on to immunology. As far as the rest of testing they want to wait until Trevor gets another infection so that insurance will pay for the CT scan (weird) but I am sure it won't be long. I'll keep everyone posted.
Childressj
New member
UPDATE:
I am not sure about this one and some of you may have heard of this mroe then me.
They tested Trevor's Pnuemonococcal Antibodies (23) and all of them were abnormally low. They are scheduling Trevor to have a pnuemovax and then they will check his levels again and if they have not improved they will send us on to immunology. As far as the rest of testing they want to wait until Trevor gets another infection so that insurance will pay for the CT scan (weird) but I am sure it won't be long. I'll keep everyone posted.
I am not sure about this one and some of you may have heard of this mroe then me.
They tested Trevor's Pnuemonococcal Antibodies (23) and all of them were abnormally low. They are scheduling Trevor to have a pnuemovax and then they will check his levels again and if they have not improved they will send us on to immunology. As far as the rest of testing they want to wait until Trevor gets another infection so that insurance will pay for the CT scan (weird) but I am sure it won't be long. I'll keep everyone posted.
Childressj
New member
He has already had the full panel ambry testing and the deletion/detection testing finding only the Delta F508 gene. That's why they want to do all this other testing, I think they are still trying to rule out CF. Hopefully if this Pnuemovax works then he should be better????? I have not heard of this stuff before and have heard it is relatively a new test to check for these antibodies, we will see. I'll kepp everyone updated though.
Childressj
New member
He has already had the full panel ambry testing and the deletion/detection testing finding only the Delta F508 gene. That's why they want to do all this other testing, I think they are still trying to rule out CF. Hopefully if this Pnuemovax works then he should be better????? I have not heard of this stuff before and have heard it is relatively a new test to check for these antibodies, we will see. I'll kepp everyone updated though.
Childressj
New member
He has already had the full panel ambry testing and the deletion/detection testing finding only the Delta F508 gene. That's why they want to do all this other testing, I think they are still trying to rule out CF. Hopefully if this Pnuemovax works then he should be better????? I have not heard of this stuff before and have heard it is relatively a new test to check for these antibodies, we will see. I'll kepp everyone updated though.
Hi Jennifer. I haven't postes much in several months because I have been so busy. I have just read this thread and wow you sound like you are on a roller coster ride like me. My daughter was diagnosed with cf about a year ago at age 12, now the cf docs aren't so sure because she only showed one mutation on the Ambry panel. We are going back to the endocrinologist and GI docs for more tests to find out why she is not growing. As mothers, you and I must keep trying to find the answers out there for our children no matter how hard it is. Like you I just know that there is something wrong with my daughter that had not been found yet. Fortunatley she looks ill so it is easier to get docs to agree to look further. I wish you the best of luck in this pursuit as it is a daunting one, but the answers are out there, so fight, fight, fight. I will keep watching to see how Trevor does and what you find. Good luck.<img src="i/expressions/face-icon-small-happy.gif" border="0">
Hi Jennifer. I haven't postes much in several months because I have been so busy. I have just read this thread and wow you sound like you are on a roller coster ride like me. My daughter was diagnosed with cf about a year ago at age 12, now the cf docs aren't so sure because she only showed one mutation on the Ambry panel. We are going back to the endocrinologist and GI docs for more tests to find out why she is not growing. As mothers, you and I must keep trying to find the answers out there for our children no matter how hard it is. Like you I just know that there is something wrong with my daughter that had not been found yet. Fortunatley she looks ill so it is easier to get docs to agree to look further. I wish you the best of luck in this pursuit as it is a daunting one, but the answers are out there, so fight, fight, fight. I will keep watching to see how Trevor does and what you find. Good luck.<img src="i/expressions/face-icon-small-happy.gif" border="0">
Hi Jennifer. I haven't postes much in several months because I have been so busy. I have just read this thread and wow you sound like you are on a roller coster ride like me. My daughter was diagnosed with cf about a year ago at age 12, now the cf docs aren't so sure because she only showed one mutation on the Ambry panel. We are going back to the endocrinologist and GI docs for more tests to find out why she is not growing. As mothers, you and I must keep trying to find the answers out there for our children no matter how hard it is. Like you I just know that there is something wrong with my daughter that had not been found yet. Fortunatley she looks ill so it is easier to get docs to agree to look further. I wish you the best of luck in this pursuit as it is a daunting one, but the answers are out there, so fight, fight, fight. I will keep watching to see how Trevor does and what you find. Good luck.<img src="i/expressions/face-icon-small-happy.gif" border="0">